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An Epidemic of Misunderstanding About Children’s Mental Health

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An Epidemic of Misunderstanding About Children’s Mental Health

By Judith Warner January 18, 2007 9:09 pmJanuary 18, 2007 9:09 pm

Roy Richard Grinker, a professor of anthropology at George Washington University, whose 15-year-old daughter is autistic, has just come out with a new book that calls into question what we’ve come to know as the autism “epidemic.” It’s called “Unstrange Minds,” and it makes the argument that the dramatic rise in the incidence of autism in the past few decades is mostly – if not entirely – the result of more and better diagnoses. In other words, in the not-so-distant past, autism as a wide-ranging diagnostic category (a “spectrum disorder”) simply didn’t exist, and it certainly wasn’t consistently measured.

Grinker isn’t the first to make this argument, but his book brings it out from the netherworld of medical journals to the media mainstream. The buzz – the fury, most likely – that his book is sure to unleash ought, I hope, to spur some very productive conversations not just about the incidence of autism, but about what has come to be another commonplace belief: that mental health disorders among children are now epidemic.

It’s easy to believe: After all, in 2001, the National Institute of Mental Health issued a widely-cited report [pdf] stating that 20 percent of children in America have a “diagnosable mental disorder.” Children’s anxiety disorders are said to be skyrocketing, as is depression, and in some communities, up to 20 percent of children are being medicated for attention-deficit hyperactivity disorder.

Does all this qualify as an epidemic of mental illness? It certainly feels like that’s the case. But the general picture is unclear. The fuzziness starts with the mental health institute’s much-contested 20-percent figure, which drops to 10 percent, in the same report, when what is being measured is “mental illness severe enough to result in significant functional impairment” – the level at which, many mental health professionals would argue, “disorder” actually begins. And that lower rate of incidence does not vary from the 5-to-15-percent prevalence of mental illness that’s been known for decades, said Dan Kindlon, a professor of child psychology at Harvard University and the author, most recently, of “Alpha Girls: Understanding the New American Girl and How She Is Changing the World.”
Kindlon, who spent two years surveying children between the ages of 4 and 18 for his previous book, “Too Much of a Good Thing: Raising Children of Character in an Age of Indulgence,” argues that, in many ways, kids are doing better today than in the past: they’re more able to identify when they need help, they aren’t burdened by the fear of stigma if they decide to seek help, and they have more and better treatment options than ever before. Perhaps because problems are identified sooner and better, the suicide rate, which rose sharply in the decades after the 1950s, has leveled off. Drug and alcohol abuse is down; so is teen pregnancy.

The one group in which the positive trends don’t hold up is the wealthy; there may well be “more pathology among white, suburban upper-class kids than there used to be,” Kindlon told me, echoing other researchers and practitioners who have found that white, upper-middle-class suburban kids are drinking, doing drugs, acting self-destructively and generally melting down from the stresses and pressures of their lives like never before, at rates exceeding those of others in their age cohort.

However, he says, the positives of life today may well outweigh the negatives. “Are kids more messed up now than 30 years ago?” he asks. “Maybe they’re messed up in a different way. Kids are more likely to report being anxious and depressed. There’s much more openness about that kind of thing. There’s more help out there for kids, which may contribute to finding more issues with kids because we can actually do something about them now.”

Complicating the question further, as Slate medical columnist Arthur Allen notes this week in an article on Grinker’s book, no systematic reporting of childhood mental illness was done until 1980, when the epoch-making diagnostic manual, the DSM-III, was published by the American Psychiatric Association. Attention-deficit hyperactivity disorder – the epidemic disorder of our era, did not exist as a diagnosis until the DSM-III gave it its original name, attention-deficit disorder.

That didn’t mean children never exhibited any of the behaviors associated with the disorder. (German psychiatrist Heinrich Hoffman’s 1844 poem, “Fidgety Phil,” is considered the first known description of a child with ADHD-type symptoms: “Let me see if Philip can/Be a little gentleman;/ Let me see if he is able/To sit still for once at table.”) And bipolar disorder, which seems poised to become the next out-of-nowhere epidemic, wasn’t believed to exist in children until very recently, and remains a highly controversial diagnosis.

You sometimes hear (if you spend a lot of time interviewing university-based psychologists and psychiatrists) that much of what’s behind the so-called epidemics of our time is a transparent play for research funding. That’s undoubtedly true. But as a means to a worthwhile end, I don’t find that terribly troublesome. What is problematic for me is when talk of epidemics starts to feed magical thinking. By which I mean: the tendency today among certain parents – and certain ideologues – to advance arguments that aren’t based upon reason and depart, potentially dangerously, from reality.

For example, the notion that autism is epidemic has led many parents to join in a crusade against childhood immunizations, based on the still-unfounded theory that the once-widely-used preservative thimerosal is the main culprit in autism’s rise. The conservative critic Mary Eberstadt (among others) has used the mental health institute’s data to buttress an argument that the movement of mothers into the workforce has sparked a “mental health catastrophe” among children. Likewise, pro-marriage advocates have used data from psychologist Jean Twenge showing a considerable rise in child “neuroticism” from the 1950s to the 1990s to bolster their claims for the quasi-magical healing powers of matrimony.

All this does nothing to address the fact that, whatever the actual numbers, too many real children with real needs today are not receiving help. The most important figure from the mental health institute’s report, for me, is one that has largely passed under the radar: that of the 20 percent of kids said to be suffering from mental disorders, only 5 to 7 percent are getting “specialty mental health services.” A continued lack of services for special needs kids – at a time when many treatment options are available to those with the means to pay for them – is clearly the most glaring mental health problem facing families today. If talk of epidemics brings needed resources, then more’s the better. But if, as is already happening, the hyped-up language instead fuels a naysayer backlash, then parents and children would be better served by reality-based advocacy.

I am a full time practicing pediatrician and I also worry about the collective mental health of our children. Concerning the recent apparent increased incidence of autism, I remember hearing at a lecture that someone reviewed the ICD-9 diagnosis codes submitted for the past few decades and found that as the incidence of autism diagnoses increased, there was an equal decrease in other diagnoses like ‘Mental Retardation’, Cerebral Pasy, etc. Inotherwords, a lot of previous diagnoses are being lumped under Autism. Has anyone else heard of this and if so, what is the source of the data?

Well said, Judith. My 9-year-old daughter copes with a generalized childhood psychosis that looks in many ways very much like Asperger’s. A proper diagnosis was hard to come by and, even with one, it’s just a place to start. (I’m in Ireland; resources are thin in the ground.) In the meantime, reality was even harder to sort out, amongst all the noise. But still I’d vote for more attention, not less, and deal with the inevitable contradictions and dissonance. I’m skeptical on issues like climate change/global warming as well, but I’m pleased that the questions are under examination. As parents, we simply must become better researchers, better editors, more critical thinkers, and more responsible advocates.

My older sister (born 1948) was diagnosed with “childhood schizophrenia” at age 2 or 3 (it was obvious something was wrong before that). She has had a variety of labels pinned on since then, most prominently “emotionally disturbed,” as fashion shifted in the mental health field, and a slapdash series of therapies to go with each change, some of which — e.g., Freudian analysis — actually did more harm than good. Thank God someone finally slapped the label “high-functioning autistic” on her. We can get some real help, financial and otherwise, now that autism is the Flavour of the Month. But when autism falls out of fashion we will have to race to hop on whatever other bandwagon is gathering steam.

I grew up in a very wealthy, WASP neighborhood and we had plenty of teen drinking, drugs, and suicides 30 years ago. I think the ones we heard about were just the tip of the iceberg. I really don’t think things have changed that dramatically.
As for treatment for mental illness not being stigmatized, that’s a joke. Maybe in NYC it isn’t, but most people aren’t able to handle the difference between simple depression and “crazy.”
Also classes in school are too large, small kids, especially boys, are forced to sit still doing boring work for too long, and teachers can be very forward about suggesting to parents that their kid be on medication. I don’t think the parents need to take all the blame here.

I believe that one reason that mental health services are underutilized is that some services-and some institutions-have bad reputations in the community-with good reason. While there are far, far better psychological and pharmacological treatments than ever before, outdated, unscientific, and even dangerous treatments still exist. Parents can not differentiate empirically proven treatments from pseudoscience and quackery and the entire mental health field gets a bad reputation as a result. Professional organizations still tolerate such useless and possibly dangerous treatment; they do almost nothing to eliminate them.

The study mentioned in the lecture was almost certainly the one below. Of course, other well done studies have come to different conclusions, which is why the increased prevalence of children diagnosed with autism remains controversial.

Stephen Katz, MD (pediatrician)

The incidence of autism in Olmsted County, Minnesota, 1976-1997: results from a population-based study.

Arch Ped Adol Med 2005 Jan;159(1):37-44
CONCLUSIONS: The incidence of research-identified autism increased in Olmsted County from 1976 to 1997, with the increase occurring among young children after the introduction of broader, more precise diagnostic criteria, increased availability of services, and increased awareness of autism. Although it is possible that unidentified environmental factors have contributed to an increase in autism, the timing of the increase suggests that it may be due to improved awareness, changes in diagnostic criteria, and availability of services, leading to identification of previously unrecognized young children with autism.

The notion that autism is an epidemic is not what’s driving parents to protest the inclusion of mercury in vaccines (in fact, while it’s missing from most standard vaccines these days, it’s still used in flu vaccines that pediatricians recommend for children). What is driving that bus is real people’s experiences with vaccines, and their own research. I’ve talked to a lot of these parents and they are hardly the foolish lemmings Judith Warner is describing.
As for childhood mental health issues, obviously, lifestyle changes affect the number of children who are having trouble coping with daily life as well as our perception of who needs help. But for those of us who have struggled with our children’s alphabet soup of diagnoses, there’s no doubt that something is going on biologically with these children that is not affecting neurotypical children. We’re the ones who take the time to do the research, talk to umpteen professionals and other parents, read books on parenting children with “issues”, put aside our egos and alter our parenting style, and often, spend out-of-pocket money on therapies we hope will affect our children for the better. We’re not dupes of the medical community or trying to stick someone else with the financial and emotional bill for dealing with a child who isn’t coping well with his enviroment (in my case, I got state-paid therapies for my son and my husband quit his job to be a full-time dad and help our son with his issues). We’d just like a little credit for knowing there’s something “off” about our children, and we’d like a little help financing the therapies we’ve found work for these kids. We’d love more research, too–we understand the insurance companies and medical community and school districts balking at funding “unproven” therapies. But when their kids need help, parents will accept a medical label that will result in funded therapies.
That said, too often I’ve heard tales of teachers who steadfastly refuse to implement simple, cost-free measures to help these kids learn in a classroom and school environment. The excuses? “We’ve always done it this way,” “I’m in charge of my classroom and what I say, goes,” “That would be too disruptive,” “I tried that once with another child and it didn’t work.” We mainstreamed the special ed kids but aren’t willing to adjust the environment to help them function better? It’s outrageous.

My hope is that the notion of an autism epidemic caused by thimerosal will finally be quashed. As a parent of three young children I am concerned about the public health risk posed by their peers left unvaccinated by otherwise reasonable, educated and informed parents alarmed by so-called exposes by the likes of RFK Jr.

Yes, it is important to be skeptical regarding assertions of “epidemics”. But that said– it is also important to keep in mind the potential power of screening, early detection, and early intervention. While some may feel uncomfortable with the apparent broadening of the “autism spectrum”– it is precisely because of the broadening of this spectrum that my daughter was identified for services and received the early intervention that she did. Research tells us that kids who are high functioning on the spectrum are quite likely the ones who benefit most from intervention services– and they are also the ones who were very likely overlooked in former days. My daughter has certainly made great gains– so I have no regrets about the early diagnosis and the broadening of criteria!

As a person with mental illness (treated) I think that many children may be diagnosed with bi-polar illness because that is the one that carries the least stigma, rather than schizophrenia which carries a much more heinous stigma.

I don’t know why ultrasounds are never fully examined as a possible cause of autism. The extensive use of ultrasounds, especially among the wealthy, has risen hand in hand with the autism epidemic.

I’m perfectly willing to believe that a broader diagnosis is the real culprit. But careful studies should rule out the effects of environmental factors before we jump to that conclusion.

I also agree with Nancy that the cost benefit analysis of individual vaccines is much more complex than the media’s constant simplification of the issue to paranoid parenting. I’m not sure why smart parents would really trust the government to screen vaccines properly and not just rubber stamp every new drug from the pharmaceuticals.

I agree with Nancy (#7) that schools are unwilling to cooperate with any kid who doesn’t fit an approved pattern. My own son, who is neuro-normal, was routinely kicked out of his public school’s kindergarten class for “disruptive behaviors” such as talking in class! (The teacher also regularly kicked out a kid who is clearly learning-disbled.) I pulled my son out of the school and enrolled him in a private kindergarten where the teacher doesn’t freak out over such “disruptive behaviors” but instead gently reminds the children (usually boys) when it’s quiet time, study time, etc. But now I find myself paying for tuition I didn’t expect, not to mention for the diagnostic services of a social services agency the public school required me to take my son to. (They found he is perfectly “normal” for a 5-year old boy)

I can only imagine how the school would treat a kid with an undiagnosed, serious disorder–they would probably call the police on him. If a solid diagnosis leads to necessary treatment and support services, I don’t blame doctors for being more willing to diagnose something.

That said, I am very worried about the taint that vaccines have recieved, in part because of claims that the rise of autism diagnoses are caused by a vaccine preservative that was used in miniscule amounts.

I have a friend whose older son is autistic and she thinks vaccines may have contributed to it (although she also contends that the child’s father has Asperger’s and wonders if it’s genetic). Another friend of mine refuses to vaccinate her boys for fear that they will develop autism or other disorders. Still another friend, whose first child died as a baby, initially blamed vaccines but it turned out that the child’s father has a genetic blip that destroyed the baby’s immune system.

People today don’t realize that children used to be permanently disabled by or die, frequently, from polio, measles, rubella, etc. Even today, about 3000 Americans die from flu each year–a number far lower than in the pre-flu vaccine days. I myself had whooping cough (pertussis) as a child because the vaccine I had didn’t “take.” And it was very painful and scary for me. We are so used to the success of vaccines that we villify and suspect them of being evil medical and/or mind control devices when, in fact, they save lives.

My heart goes out to parents of child with mental health issues. I fully support research into treatment and diagnostics. But when we’re able to diagnose more accurately and more cases of a given disorder are found, we instinctively look for something to blame. When it’s something good like vaccines, the ramifications of blame can be tragic, as seen in the rise of once-eradicated childhood illnesses like measles.

The conclusion that some of this perceived “epidemic” is due to a new availability of diagnoses is obvious and long-overdue, but that doesn’t mean that something else is going on as well — as Judith Warner says;”Does all this qualify as an epidemic of mental illness? It certainly feels like that’s the case.” There seems to be an epidemic of ADHD, depression, OCD, bi-polar disorder, autism, etc. because we are noticing them more, but perhaps we are also noticing them more because they are increasing in incidence.

And when we start looking for causes for this increase, perhaps we ought to look at why we are seeing these behaviors as “disorders” in the first place. While autism in its extreme range would be seen as a problem (though given a different name, perhaps) in any environment or historical period, in other times, milder forms might just be accepted as part of “the way he/she is.” I suspect that part of the problem is that our social environment has become considerably less forgiving of people who “deviate from the norm” (if such a norm, in fact, exists). It has been observed by many people that pressures on kids to function in overcrowded, highly regimented classrooms (and pressures on schools and teachers to maintain order in those classrooms) may be part of the reason for an astounding increase in the diagnosis of ADHD, and similar effects explain the commonness of OCD (there was an excellent story on this in the New Yorker a few years ago — “The Doubting Disease”). Finally, as anyone who has kids right now knows, childhood in America has become considerably more stressful in recent decades (a perennial topic in this blog)and when you increase stress, disfunction (or behavior that is perceived as disfunction) also tends to increase.

Behavior has two main causes — genetics and social environment. It seems to me that it is considerably less likely that there has been some massive change in the physical state of our children (mercury poisioning, mass mutation, polluted drinking water, etc.) than that there have been radical changes in our social environment — something that is clearly going on.

Fifty years ago Bruno Betelheim insisted that autism was caused by indifferent mothers, which caused me and my sisters to hope that if Bruno Betelheim was reincarnated, he would come back as a mother of an autistic child. Parents of children with any differences whatsoever are under the gun these days to get them “normalized.” It is the society’s focus now to pathologize every behavior, whether it be over-exuberant boys or overly shy girls or vice versa. Teachers, overwhelmed by too many students in the class, want children to be easily managed so they can learn something. But they’re not allowed to apply any strong discipline to achieve this result – a parent might object. If parents aren’t using discipline, and teachers can’t apply discipline, medication starts to look like a good fix. In any case, the slightly different child, who in decades past was simply seen as different, is now standing under the umbrella of autism. Let’s see what they are diagnosing in the next ten years. Maybe they’ll start to shine the light on the ubiquitous use of the sonargram in pregnancy. AHA!

A good article about a broadly relevant issue. The most important part, though, from my perspective, is the last paragraph. As a psychologist who works with low income teenagers and their families in the Bronx, I see a serious lack of available and affordable high quality services for youth with mental health and/or developmental difficulties. Many of the clinics that do exist have long waiting lists, provide limited services and do not accept people without the right kind of insurance coverage and/or an address in their “catchment” area. While there are youngsters who get “over diagnosed” or receive uneeded treatments, many of the kids I see do not get what they really do need.

As a biochemist (Assistant Professor at Michigan State) and a father of a four-year-old, I’d like to strongly second Stephen Connolly’s comment. There have already been well-documented spikes in measles cases, some with dangerous complications, in the U.K. and elsewhere as unfounded fears of immunizations spread in the media. Because of the nature of epidemics, a pool of unvaccinated children poses a serious risk to *every* child, including those who received the vaccinations. Granted, putting a heavy metal like mercury in children’s immunizations was a remarkably stupid thing to do on first principles, but the data showing a connection to autism just haven’t held up. In a way that’s too bad, since removing thimerosal is an easy fix; if that was the problem, we’ll see a steep decline in new autism cases as children born in 2002 and later move through the ages when diagnosis is typically made. Unfortunately, I don’t expect this to happen.

On the more general topic, I tend to suspect that the most significant “epidemic” is of a willingness among drug companies and scientists supported by them to describe behaviors within the normal spectrum of childhood as pathological, and thus needing treatment with high-margin pharmaceuticals. Psychoactive drugs are incredibly useful in cases of true pathology, but can be remarkably damaging when we attempt to use them to fine-tune childhood behavior to match our expectations.

It seems to me that putting a high number of children, with still-developing brains, medicated with psychoactive drugs is a massive experiment with an unknown outcome. What sorts of unintended consequences will we discover down the road when all these kids grow up?

I’ll acknowledge that incidence of autistic spectrum disoders , and other mental health problems, is increasing, but some appearance of this may be that as infectious diseses, poisonings, nutritional disorders have decreased, more attention is given to behavioral problems. I retired from 40 years of practice in 1999, and observed, and continue to observe these trends, patterns.
The delightful film “Charlotte’s Web” has a scene in which the mother confronts the family doctot about her daughter, played by Dakota Fanning. She is concerned that the little girl is spending too much time playing with the farm animals and not with other kids. After a few appropriate questions, he says “Mom, she has a condition called CHILDHOOD, and it will pass.” Perhaps sometimes we need to just be a little more patient and supportive and wait before referring for extensive consultations.
Kenn Moss, MT
Retired pediatrician

As a special education consultant to several local education agencies in the mid-atlantic region, a tangible way to determine the %’s of children with mental health disabilities is to obtain the number of special education students served by school districts. In a sample of three city school systems,the percentages were 12, 17, and 20%’s. In a sample of three wealthy suburban school systems, the percentages were 11,12, and 14%’s. Approximately 94% of these students are labeled as emotionally disturbed, learning distabled, attention deficit hyperactivity disorder and autism. In general, school systems are trying desperately to reduce the numbers of disabled students and/or try to avoid the special education label altogether. In most cases, the cost of serving special education students according to a legal document called the Indivudal Education Plan (IEP) is creating out of control spending for school districts. The solutions for serving special education students with quality services that produce positive outcomes is an incredibly difficult challenge for school sytems.

I am not going to go so far as to suggest that the purported “rise” in diagnosis of mental health disorders in children is due to the demise of the nuclear family. That would be too simplistic.

However, I think that if and when we can identify if there is indeed an increase in the incidence and severity of mental health problems in kids, we need to look at all possible factors, be they genetic, environmental, or because of the erosion of families, extended families and communities who care for children.

Additionally, I totally agree that the idea of using heavy metal derivatives as a preservative for vaccines is not the brightest one. Luckily, thimerisol has been replaced in most vaccines with other preservatives. The flu shot indeed is still being produced with thimerisol, but it is also available without. I know the city of Madison, WI, for example, has the thimerisol-free ones in their free clinic. Thimerisol exposure can no longer be used as an excuse for not vaccinating. I HOPE that means that more people will be vaccinating again. It’s too dangerous to NOT.

At age 40, I was finally diagnosed with Asperger’s, after years of wondering why so much of me “seemed” autistic, when at the same time, I was married, working, and raising kids. However, getting the diagnosis was like getting a pair of glasses for the first time: everything was so much clearer.

The issues and concerns I have are similar to what Abigail mentioned, the urge to “normalize” everyone these days. It is not limited to just children! Maybe I’m just hyper-sensitive after my diagnosis, but I seem to read and hear quite a bit that the “employee of tomorrow” will need to have excellent communication skills, a high EQ, will need to be diplomatic, have a wow-factor, and so on. Well, I don’t have those things, and probably never will. While my family—especially my spouse, thank goodness—has always been accepting of me as I am and attributes anything unusual about my behavior to “j just being j”, I worry about what the future holds for me and others like me in the future, including my child that I strongly suspect has Asperger’s as well.

While on the one hand, I can only wonder what my life would have been like if I had had a diagnosis and services at age 14 instead of 40, on the other hand, what would life be like if I was accepted for who and what I am. You know what drove me to obtain the diagnosis? Problems at a new job in which the “culture” of the organization is very laid-back, anti-technical, communicates via the water-cooler, and diplomatic to the point of being almost duplicitous. After two bad reviews (something new for me), I finally went to a counselor. Yes, it’s nice knowing that I am the way I am because I’m hardwired to be this way, but on the other hand, it’s clear to me now that I will never be the “employee of tomorrow”.

Obviously there are truly autistic children and a lay person can see this as well. The problem is with the trend to label everyone autistic. Not only with autism but in the general are of health the diagnoses are said to be a hundred years ahead of the prognoses.

And then there are the ridiculous ones like “explosive violent disorder” which I will plead guilty as I observe the epidemic of labeling.

Mental health therapy can do some marvelous work when done by wise, competent professionals and vice versa when the professionals are not good.

The emphasis should be on how we can help families and their children not how we can label them.

To jj’s comments, thank you for helping me with a dilemma as to whether to tell my now 25-year-old nephew what his parents have not wanted to find the label for over the years. He is now living with me to attend college, and I wondered for months before he moved here whether I would share information with him about his possible “label.” He is here because he is as comfortable in the world with us as anyone, so wish me, no him, luck–and again thank you.

“The conservative critic Mary Eberstadt (among others) has used the mental health institute’s data to buttress an argument that the movement of mothers into the workforce has sparked a “mental health catastrophe” among children. Likewise, pro-marriage advocates have used data from psychologist Jean Twenge showing a considerable rise in child “neuroticism” from the 1950s to the 1990s to bolster their claims for the quasi-magical healing powers of matrimony.”

There is no magical healing power to matrimony. However, in addition to the love and attention that two parents can provide children, the two-parent family has more financial resources to help children with needs.

I applaud Judith Warner for shedding light on the myriad misunderstandings surrounding diagnosis and treatment of children’s mental health. As the parent/patient representative to the FDA’s psychopharmacology advisory committee I have watched the backlash against the use of medication to treat depression in chldren and young people with dismay. Ms. Warner sites as progess in this field declining suicide rates among young people. But recent statistics from the Centers for Disease Control are beginning to show a different and troubling picture. Since the FDA’s black box warning on antidepressants (I voted for it at the time; I now regret it) was imposed in late 2004, parents and physicians have been increasingly reluctant to prescribe. And for the first time in decades, the suicide rate among young people is on the rise.